Navigating the Gap: Diabetes Support in Emerging Adulthood

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Daniel I Simon, MD (Host): Hello, everyone. Thank you for listening to another episode of Science@UH. I am your host, Dr. Dan Simon, and today I am happy to be joined by Julia Blanchette, nurse scientist lead for Diabetes Care and Education and Program Director of Diabetes Research at University Hospitals Diabetes and Metabolic Care Center, as well as Assistant Professor of Medicine at Case Western Reserve University.

Julia received her BSN in nursing science from the Francis Payne Bolton School of Nursing at Case Western in 2014, and her PhD from Case Western University School of Graduate Studies in 2019. She completed her postdoctoral fellowship at the University of Utah College of Nursing and Integrated Diabetes Management in 2021.

Dr. Blanchette examines the impacts of financial, psychological, and health literacy barriers on diabetes self-management behaviors and outcomes during emerging adulthood and throughout the lifespan. Welcome, Julia.

Julia Blanchette, PhD, RN: Thank you so much. I'm excited to be here.

Dr. Daniel Simon: So Julia, as a nurse scientist, you are very interested in Type 1 diabetes management for young adults age 18 to 25. Can you tell us why you are interested in this age group and what kind of resources your research has developed to educate young adults with Type 1 diabetes?

Julia Blanchette, PhD, RN: So right now, my research team and some diabetes community members are working on developing and testing a financial and health insurance toolkit for young adults with Type 1 diabetes. But the story to how we got here, it's a little bit long, but can I go back to some of my early days in nursing. Is that okay

Dr. Daniel Simon: Absolutely.

Julia Blanchette, PhD, RN: Okay, So, my first job as a registered nurse was right out of my undergrad and I was a nurse for the counselor in training group, so about 16 to 17 year olds at a diabetes camp. And it was the same camp that I went to when I grew up. And so I spent 10 weeks right out of my nursing degree with teenagers and young adults living with Type 1 diabetes, and I noticed that they had this amazing peer support from Diabetes Camp. But they still had so many barriers to diabetes self-management, and that really caught my attention. And then around the same time, I had my personal, first adult endocrinology visit for Type 1 diabetes. And I was really surprised at how unprepared I was for the adult health care system. And so these two observations are what really piqued my interest in understanding self-management behaviors during young adulthood.

Dr. Daniel Simon: So let me ask you a question. I mean, it has got to be an overwhelming shock, for an adolescent young adult to receive the diagnosis of Type 1 diabetes. Obviously, you focused on a financial aspect, but take us through a little bit more of the psychological and adaptive aspects of how do you deal with a diagnosis which is really life changing.

Julia Blanchette, PhD, RN: First of all, it depends on where you are in the stages of development. So someone who's a school aged child is going to have a different reaction and need different types of support than when you're an adolescent or a young adult. And so, what we find is that actually young adults have a lot of gaps in the support that they should receive during that period.

And, young adulthood in general, or this period of emerging adulthood, the ages 18 to 25, or even up to age 30, is when you're kind of stuck in between childhood and adulthood and you're learning to become fully independent. And so during that time, if you're diagnosed with diabetes or any other chronic health condition, you have to manage that on top of learning how to become an adult and taking on all of those responsibilities. So it becomes a lot to balance if you're diagnosed during emerging adulthood or even if you're just adjusting to self-management during emerging adulthood. It is very complex.

Dr. Daniel Simon: So let's talk a little bit about during your postdoctoral fellowship, you developed a pilot financial toolkit through community engaged research. Can you tell us about how those findings have informed what you're doing now and what patients are doing? Obviously, insulin can be very expensive and testing your blood sugar can be. How does that all factor into what you're doing?

Julia Blanchette, PhD, RN: I'm going to actually back up a little bit. So during my PhD, I had started looking at the transition from pediatric to adult diabetes care and understanding what emerging adulthood is and what it is to self-manage a chronic condition like Type I diabetes during that time. And at the same time, there were all these news stories coming out, about young adults who were dying because they couldn't access insulin or afford insulin, or they were having lapses in health insurance. And so when I started to look at the impact of financial stress on diabetes outcomes during young adulthood, and so that was what my dissertation looked at. And we found, not surprisingly, that higher levels of financial stress negatively contribute to glycemic outcomes and negatively contribute to diabetes related quality of life. And so during my postdoc, I then wanted to look at developing an intervention to target financial stress during emerging adulthood for those with Type 1 diabetes, but, you know, it's really hard to develop an intervention when people are experiencing so many of these real life factors, like inability to afford medications or access medications. So I worked with a community advisory board to help me identify what are the key factors that drive financial stress during emerging adulthood and what can we do about it. And so, what my community advisory board during my postdoc identified, is that it actually relates a lot to health insurance literacy, and learning how to navigate the healthcare system. So I developed a pilot intervention during my postdoc, and we're now testing it larger scale right now.

Dr. Daniel Simon: Great. So, Congratulations, what exciting news on your 2.25 million dollar grant from the Leona M. and Harry B. Helmsley Charitable Trust. And this three year study aims to develop, refine, and test a Type 1 diabetes toolkit in collaboration, you know, with your community advisory board. And there, I guess, are four academic medical centers were selected to participate to ensure a diverse collection of patients. Can you tell us more about the research project and how it's going and your collaboration with these other institutions?

Julia Blanchette, PhD, RN: So this project, it's really exciting. It's really expanding what I did during my postdoc project. So we, have a new community advisory board and the Diabetes Link, which is a national non-profit organization that supports young adults living with diabetes; is actually partnering with University Hospitals to develop this toolkit with a community advisory board.

So, over the past year, we have worked with 12 community advisory board members and we actually have a toolkit developed, which is really exciting. And that was phase one. So phase two is to now test this toolkit in an RCT to look at its effectiveness on improving health insurance literacy, financial stress, diabetes related quality of life, and diabetes distress and glycemic outcomes over a one year period.

And so when we were thinking about testing it, since we're looking at health insurance literacy, first of all, we want to make sure that we are including individuals who really could use this toolkit the most. And part of it is we want to make sure that it applies pretty broadly, so not just to individuals living in Ohio. We want to make sure is applicable to young adults in other states as well.

And different states have different legislation for health insurance. So because of that, we thought it was best to make sure that we recruited from multiple states. And the way we chose the other academic partners is, they have really great success in recruiting and retaining young adults who are racially and ethnically diverse and on public health insurance in their research.

So, we're partnering with Children's Hospital, L.A., University of Florida, and then Children's Hospital of Philadelphia. And so we're really excited to be partnering with them for recruitment. They all kind of have different recruitment methods because they know their populations the best and they've been really successful in the past. And so we're just very thankful that they're recruitment sites for us.

Dr. Daniel Simon: That's terrific. So, you know, as a cardiologist, we clearly understand that tight control in Type 1 diabetes is associated with reduction in cardiovascular complications. And here we are sitting at Rainbow Babies and Children's Hospital, which is one of the primary leaders of the DCCT trial, which now over 30 years ago, still continuously funded, showed us that tight control reduces retinopathy complications, blindness in the eyes, kidney complications, cardiovascular. And we have all these new technologies, to improve control, everything from insulin pumps to continuous monitoring. How accessible are these new technologies to patients? I mean, clearly having continuous insulin delivery and continuous monitoring and, having it Bluetooth to your iPhone is amazing, but is it accessible to the vast majority of populations?

Julia Blanchette, PhD, RN: So, if you live in Ohio like us, we actually have amazing state legislation where, anyone with diabetes in Ohio can access a continuous glucose monitor. When I'm saying access, it means they can get it covered by insurance, no cost. That doesn't mean they necessarily start the technology, though. And so we have to take into account there's still bias when healthcare providers are recommending these technologies. There's insurance mediated bias. There's racial, ethnic bias. And we really need to do a good job of being cognizant that we are supporting all people with diabetes and we know that these technologies help all people with diabetes. Some people may need a little more support in starting these systems and staying on these systems. But I don't know if you have heard of Dr. Sarah McLeish, but she has a really awesome NIH funded study right now that's looking at improving technology uptake and usage in adolescents with Type 1 diabetes.

And so, they're using community health workers in that study. And so I think we do need to use additional resources in certain situations to improve uptake because we know that, those that are racially and ethnically diverse and on public health insurance still do not use automated insulin delivery systems and continuous glucose monitors at the same percentage as the rest of the population.

Dr. Daniel Simon: So your toolkit was really focused on emerging adults, adolescent young adults. Do you envision that this can be helpful, for instance, in the elderly? I would imagine as you hit the Medicare age and there could be gaps, especially in Part D, does your toolkit help?

Julia Blanchette, PhD, RN: So we have a Medicaid specific module for this toolkit. We don't have a Medicare specific module because since we're working with a young adult community advisory board, of course, they were more concerned about those without insurance and those on Medicaid due to the age. But I think in the future, we can use this model that I used, working with the community advisory board to develop this resource to target health insurance literacy for diabetes for this population. We can use the same type of model to develop a toolkit for older adults on Medicaid. And I think it is so incredibly needed.

There are so many gaps in care and in diabetes technology usage, when you get to that Medicaid transition, just like when you're transitioning to new insurance during young adulthood. So they experience a lot of the same types of disruptions in health insurance. And I think it is totally needed, but I would guess that maybe working with a community advisory board of older adults, they may not want a young adult micro video series to teach them, information about Medicare. They might say they want peer support or maybe something in person. So, I think it would be excellent to use the same type of community engaged model to develop them a resource because it's so needed.

Dr. Daniel Simon: That's terrific. So, we think about, Cleveland and Cuyahoga County. Obesity is now 35 plus percent of the population. Type 2 diabetes is epidemic. In fact, the decrease in cardiovascular mortality has now up-ticked for the first time in the last few years, because really of obesity and Type 2 diabetes. So, we have a lot more Type 2 diabetics. Has your work extended into Type 2 diabetes because clearly, these individuals face enormous financial challenges, especially for those who are trying, to get Ozempic, or Mounjaro. So, what about a toolkit for Type 2?

Julia Blanchette, PhD, RN: I think applying some of the resources we already have, to Type 2, will work really well. So there are certain videos that are on how to advocate for yourself, what to do if you can't get a medication that you need. And so some of the content of the toolkit that we just developed over the past year can apply to younger adults living with Type 2 diabetes. But I do think that we need to make another iteration of the toolkit specific, or not specific, but more broad, to all people living with diabetes.

The reason this one's specific to Type 1 is because the Helmsley Charitable Trust has a Type 1 portfolio, so they're really interested in improving Type 1 diabetes, but that doesn't mean that this does not apply to Type 2 diabetes. It certainly can and it's certainly needed.

Dr. Daniel Simon: Well, that's really terrific. So, you know, it's so inspiring to listen to you today and to look at one of our up and coming research stars in our nursing space. I know Michelle Hereford, our Chief Nursing Executive, would be so very proud of you. Thank you so much for taking time to speak with us today, Julia.

To learn more about research at University Hospitals, please visit uhhospitals.org/uhresearch. Thank you.